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Author: ahusalliance

This author has written 437 articles
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Read more about the article aHUS Trials Watch 4

aHUS Trials Watch 4

  • Post author:ahusalliance
  • Post published:February 21, 2018
  • Post category:Featured
  • Post comments:0 Comments

Some news about trials affecting those with aHUS; but at two ends of the clinical research spectrum. The first is about…

Continue ReadingaHUS Trials Watch 4
Read more about the article Transplant and aHUS Risks

Transplant and aHUS Risks

  • Post author:ahusalliance
  • Post published:February 9, 2018
  • Post category:Featured
  • Post comments:0 Comments

The aHUS Alliance was invited by the aHUS Registry Scientific Board to say what matters most to patients in aHUS research.…

Continue ReadingTransplant and aHUS Risks
Read more about the article aHUS Patients have a value beyond the balance sheet

aHUS Patients have a value beyond the balance sheet

  • Post author:ahusalliance
  • Post published:February 6, 2018
  • Post category:Featured
  • Post comments:0 Comments

It was little known, but Alexion decided years ago that it would reinvest 40% of any of its profits from the…

Continue ReadingaHUS Patients have a value beyond the balance sheet
Read more about the article They do not get it , or do they?

They do not get it , or do they?

  • Post author:ahusalliance
  • Post published:February 1, 2018
  • Post category:Featured
  • Post comments:0 Comments

Everyone gets ill at some time don't they? Whether it is for example  a cold, stomach upset or measles, people know…

Continue ReadingThey do not get it , or do they?
Read more about the article Patients Included:  Reality or Unmet Goal? (#4: MYTHS of Rare Disease Advocacy)

Patients Included: Reality or Unmet Goal? (#4: MYTHS of Rare Disease Advocacy)

  • Post author:ahusalliance
  • Post published:January 16, 2018
  • Post category:Featured
  • Post comments:0 Comments

    The Last in the aHUS Alliance Four Part Series Patients Included: Reality or Unmet Goal? 4 MYTHS of Rare…

Continue ReadingPatients Included: Reality or Unmet Goal? (#4: MYTHS of Rare Disease Advocacy)
Read more about the article Pathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3

Pathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3

  • Post author:ahusalliance
  • Post published:January 7, 2018
  • Post category:Featured
  • Post comments:0 Comments

        4 MYTHS of Rare Disease Advocacy:  Digging deeper into Common Misperceptions Pathways of Patient Engagement & Recruitment…

Continue ReadingPathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3
Read more about the article aHUS Group Expectations for 2018 (continued)

aHUS Group Expectations for 2018 (continued)

  • Post author:ahusalliance
  • Post published:January 4, 2018
  • Post category:Featured
  • Post comments:0 Comments

Following aHUS India's response came two replies from The Netherlands and UK in Europe. Their expectations reflect a very different position…

Continue ReadingaHUS Group Expectations for 2018 (continued)
Read more about the article aHUS Patient Group Expectations of 2018- India

aHUS Patient Group Expectations of 2018- India

  • Post author:ahusalliance
  • Post published:January 2, 2018
  • Post category:Featured
  • Post comments:0 Comments

The alliance has asked all the affiliated aHUS organisations and groups to provide their thoughts on what they expect to happen…

Continue ReadingaHUS Patient Group Expectations of 2018- India
Read more about the article An open letter to Alexion for 2018

An open letter to Alexion for 2018

  • Post author:ahusalliance
  • Post published:January 1, 2018
  • Post category:Featured
  • Post comments:0 Comments

1 January 2018 Dear Alexion As you know aHUS is a life threatening and debilitating condition. You have the only treatment…

Continue ReadingAn open letter to Alexion for 2018
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